NIH and Lacks Family Reach Agreement on Controlled Access to Data

After more than four months of discussions, the National Institutes of Health and the family of Henrietta Lacks have reached a mutual agreement that will serve to both advance medical research and protect Lacks’ descendants.

In 1951, Lacks died of cervical cancer at Johns Hopkins Hospital in Baltimore. Before her death, doctors removed some of her tumor cells. And something amazing happened. Her cells had a property not seen before: They could grow in a lab. Those cells, now called HeLa cell, were everlasting.

“We have agreed that NIH-supported researchers will deposit any DNA sequences derived from HeLa cells into NIH’s dbGAP database, and have established a process through which researchers can request controlled access to that data. Such requests will be reviewed by a working group consisting of physicians, scientists, a bioethicist and two members of the Lacks family,” said Francis Collins, MD, PhD, NIH director.

The HeLa cells have been the subject of more than 74,000 studies; they have served as the foundation for developing vaccines and provided insights into cell biology, in vitro fertilization and cancer.